My wife and I, who are both physicians, are the proud parents of four grown men, none of whom are physicians or have any plans to be physicians. While we were not able to encourage them towards careers in the health sciences, we have, however, taught them over the years how to be smart patients. We have taught them, that to be a smart patient requires a combination of confidence, skill and experience and is never as simple as handing yourself over to a doctor or nurse’s care. A patent must follow four principles:
- Ask Questions: Preferably these questions should be as specific as possible however when one doesn't know the specific questions to ask, any open ended questions are fine. “Why do you want to order this test?” is an example of an open ended question. “What is that medication you are prescribing and what is it supposed to accomplish?” Questions should be focused on the plan of action going forward and how that plan will contribute to good outcomes.
- Remember that You Are the Expert about Yourself: While a doctor and a nurse can talk about pathology and disease, only you know how you feel. You are the expert on your own values, and your own priorities and that matters when decisions are made about medical care. No health profession can ever tell you that you do not have a symptom that you are feeling or that your values and beliefs are not important.
- Be respectful but also be demanding. You are an autonomous individual who deserves to have a say in what is happening to you. You should never accept an autocratic approach to your care. You should show respect to the health professionals and demand respect in return. The doctors and nurses should always solicit your thoughts and opinions and if they do not, you should offer them. .
- Have an Assistant: When possible, have a helper with you or available who can also listen and ask questions and help you interpret the answers. When you are sick, your ability to understand and to make your own decisions may be impaired and someone you trust should be available to help you with that understanding and decision making.
When you are traveling however, the instructions on how to be a smart patient may be more difficult to carry out. Medicine is not only about biology, it is also about culture. What happens when a person is sick and alone in a foreign culture? The principles I outlined above may be more difficult to use when one is trying to communicate in another language in a place in which the cultural norms are very different.
My youngest son, who is twenty, is now in Prague, Czech Republic doing a semester abroad as a junior in college. This week, he developed abdominal pain which, over the course of 24 hours, progressed, was associated with diarrhea and finally became severe and localized to the right lower part of the abdomen – the right lower quadrant. My wife and I spoke to him and advised him to have someone take him to an Emergency Room. He contacted his program director who gave him instructions to take the bus to the hospital. In the ER of the hospital in Prague, he was evaluated and told that he needed surgery for presumed appendicitis.
Because he is a smart patient, he asked questions. He knew, from talking to us that diagnostic tests, usually an abdominal CT is part of the standard of care in the United States before someone is operated on for appendicitis so he asked the question of his Czech doctors whether they should obtain a CT scan first. The answer they gave was that a CT scan would not help and it would not be done. They made it clear that the question was inappropriate as he should do as he is told. He was helpless to pursue the conversation and it was clear that the physicians expected him to stay quiet and let them do their work.
Apart from the attitudes and communication between doctors and patients, it is often true that what is standard medically in the US is not standard in other parts of the world. An article in the journal, Pediatric Radiology in 2009 entitled “Imaging of Acute Appendicitis in Children …EU versus US” written by a group in the Netherlands, talks about this difference in approach to possible appendix surgery and ends with the statement, “Appendectomy should not be undertaken without imaging to confirm the clinical suspicion.” This article supports the US norm over the European norm.
However my son is in the Czech Republic, part of the EU, and needed care so he was taken to surgery where mesenteric lymphadenitis was found instead of acute appendicitis. In another European study, written in 2011 and published in the European Journal of Pediatric Surgery, the authors determined that “it is not possible to accurately distinguish acute mesenteric lymphadenitis from acute appendicitis using clinical evaluation alone.” However due to having fewer CT scanners, and having the medical standard still being that a clinical evaluation alone leads to an appendectomy, my son had unnecessary surgery. His voice asking for the CT scan was ignored and even may have labeled him as a disruptive patient, or even worse, a disruptive American patient.
Post-operatively, in the US, we now send people home after a simple appendectomy the day after surgery. We start feeding people relatively rapidly and have them get out of bed and move around very soon after this type of surgery. My son, knowing this, asked when he could eat, when he could get out of bed and when he could be discharged to return to his Prague apartment. These questions were met with confusion, as if the questions were not understood as people in Prague do not usually question their physicians. The surgical staff would also not talk with me or my wife as they did not understand why a father, even if that father is a physician, in another country would question anything they were doing. At one point, while on the phone with my son in the hospital and with the doctor in the room, the doctor proceeded to do a procedure on my son while refusing to discuss the need for the procedure or any details about what he was doing. My son was in a position in which he was hard pressed to advocate for himself and I was equally unable to advocate with people refusing to talk with me.
The most difficult part of the experience for my son, who is an excellent example of an empowered, smart patient, was the inability to work with the caregivers. The culture there is hierarchical with the doctors and the nurses telling the patients what to do, and not accepting the questioning that is rapidly becoming the standard in the US system. In the US, we are starting to take for granted that a commitment to patient centered care, patient engagement and shared decision making is critical for good patient care. We are experimenting with open notes and more participatory models of care, such as the NUKA system of care and the Accolade model of Health Assistants which encourages patient empowerment.
In many ways, as we try to find ways in the United States to make healthcare more available and more equitable, other systems of care such as those in Europe are pointed to as examples to learn from. The European systems of care are seen as more able to create accessible and affordable care for all.
While we may have a lot to learn from the European systems of healthcare, they also have a lot to learn from the United States especially in improving the communication and working relationship between doctor and patient. We are learning in the US that better care is rendered when more authority and respect is given to patients as they work their way through the healthcare system. This is a learning that should be spread throughout the world.